I'm excited to talk to you about the sleep impact of caregiving for people with epilepsy. You know, we've talked a lot about the sleep of people with epilepsy themselves, but this discussion wouldn't be complete if we didn't talk about the sleep of the people who take care of people with epilepsy. This is my disclosures. Today, I'd like you to understand how the sleep disruption of children with epilepsy impacts caregiver sleep and caregiver health. I'd like you to understand the effect of impaired caregiver sleep on caregiver health, as well as its social and economic impact. The scope of this discussion is very broad, so I'm going to try to shorten it into 20 minutes. But there are so many ways that impaired caregiver sleep can affect the health and overall functioning of the caregiver in the family. And then I'd like you to recognize ways to advocate for improved caregiver sleep. I'm going to start off with a case. And I'm going to start off with a case that pertains to one of my calls as a pulmonology fellow. At around 2 to 3 AM, I got a page from a patient who we managed for chronic lung disease. The patient had sleep apnea. She was about three or four years old. The child also has epilepsy. But really, the parent called because they themselves couldn't sleep. I think they just needed someone to talk to, perhaps, at that point in time in the night. But they were saying that not only had the child had progressively worse sleep as their disease progressed, and then they also had a URI and just worsening of their sleep apnea acutely, but this was a chronic problem. And they were saying that their child hadn't been sleeping maybe three to four hours a night over a span of weeks. And the parent themselves couldn't sleep. And they were just at their wits' end. They didn't know what to do. They were saying it's obviously difficult to take care of their child when they themselves were in a sleep-deprived state and just feeling out of sorts. So I think keeping that parent in mind, that is just so applicable to the whole talk, but also quite representative of many caregivers of people with epilepsy. So before we're talking about insufficient sleep, we should all be on the same page about what insufficient sleep is. The American Academy of Sleep Medicine recommends at least seven hours of sleep for adults in a 24-hour period so that, ideally, we should have our sleep all in one block of time. But that does include naps. We learned that people over, if you're napping at four to five years of age, that's not normal. But people who are tired and who are sleepy will nap. And that is included in the total sleep time. And you'll see that in the sleep logs that we saw in the previous presentations. And then I'm also going to be talking about sleep disturbances. In this presentation, I'm defining a sleep disturbance as anything that disrupts that consolidated sleep period. And that can be a behavioral cause, for example, checking on a child to see if they have seizures, medication administration, or a medical sleep problem of the caregiver themselves. And then we're talking about sleep duration. Insufficient sleep, how do we know if a person has sufficient sleep? There are a few ways to measure or estimate sleep duration. The gold standard is polysomnography, where sleep is measured via EEG. But then that's not feasible in most studies, especially longitudinal studies or large cross-sectional studies. So actigraphy can be used. That was also described in a prior presentation. Parent self-report and questionnaire are the primary ways, however, that most of the studies estimate sleep. And that's how sleep will be measured or is measured in these studies that I'm going to share with you today. How much sleep are caregivers of people with epilepsy actually getting? One study by Cottrell and colleagues in 2005, they provided questionnaires. And via parent self-report, they found that an average estimated nightly sleep time was four and a half hours. The average frequency of nocturnal awakenings to check on the child was at least three awakenings of the caregiver per night. They found that 60% of parents perceived that their sleep quality was a detriment to their own health and daytime functioning. They also found that the number of nighttime awakenings was inversely associated with poor parental sleep quality, decreased marital satisfaction, and poor parental health. So you can see that this insufficient sleep really sets the stage for multiple issues, whether it's the parent or caregiver's own chronic health, own mental health, and then own financial or social health as well. So again, this is in the context of a caregiver having to provide a lot of extra caregiving apart from the typical caregiving that any parent would provide to their child. At least one third of families of children with epilepsy spend over 21 hours of a week providing health care at home outside of usual caregiving. This study, which assessed several thousand surveys, there were telephone surveys from the National Survey of Children with Special Health Care Needs, found that at least 31.5% of parents endorsed providing over 21 hours a week of caregiving. And so interestingly, this was a large telephone survey which assessed many things. And they kind of dichotomized the number of hours spent caregiving, greater than 21 hours and less than 21 hours. So I imagine that probably these parents are providing a lot more than 21 hours a week providing care at home. How does this compare to caregivers of children with other chronic illnesses? That might be a question that you ask. Well, these children have epilepsy. It's a chronic illness. Parents have to spend more time taking care of their children. And it's true. For example, in a sample of children who were chronically ventilator dependent, children who have cystic fibrosis, which is a chronic disease, this study by Meltzer and colleagues in 2006 found that the total sleep time of those parents also was decreased. But interestingly, it wasn't as decreased as the parents of children with epilepsy. So here in this study, they found that the parents and caregivers of children who are chronically ventilated was 6.31 hours plus or minus 1.2, so approaching that 4.5 hours. And then children who have less nighttime needs, such as cystic fibrosis, the total sleep time approached the total sleep time of parents who do not have a child with special health care needs, so 7.34 hours plus or minus 0.9 hours. You also see that the wake time of the parents who had ventilated children was much earlier than the wake time of a child with moderate health care needs or no health care needs. And then the indices of sleep quality, as measured by the Pittsburgh Sleep Quality Index, also were much worse. Sleep quality was worse. Fatigue, daytime functioning, depression, all of that was worse in the parents who had a child with a complex illness. Interestingly, parental sleep disruption has a greater association with parenting stress in families of children with epilepsy compared to parents of children with another neurologic condition. And this was determined by Riley and colleagues in 2018. One might say, well, I also didn't sleep very well when I had a young child. How do we know that it's not just the features of parenthood? Well, a large-scale epidemiologic study by Hagen and colleagues in 2013 looked at the Wisconsin sleep cohort, and they found that typically parents are sleeping about 7.3 hours with a standard deviation, interestingly, exactly of 0.9 in all subjects, subjects with any minor, and subjects with no minor children. And they mainly interviewed mothers. They found that daytime sleepiness was increased in subjects with no minor children, which I found interesting. And the propensity to doze off was also greater in subjects with no minor children. But regardless, this is not just a feature of caregiving for a child. This issue, I think, is more stark in parents or caregivers of children with epilepsy. Again, so on the y-axis here in the same study, you see the reduction in mean sleep duration. So with each child in the family between the age categories of 0 to 1 year, 2 to 5 years, 6 to 18 years, and greater than 18 years, there is a reduction in sleep duration. So parents of children, younger children, have less sleep in general than parents of older children with each subsequent child. But it doesn't add up to the 4.5 hours or around 5 hours that a caregiver or parent of a child with epilepsy would get. Again, how is the sleep of parents or caregivers of children with epilepsy different to the sleep of a parent of typically developing children? Well, room sharing and co-sleeping is more common in children with epilepsy. And interestingly, both are more likely to be initiated by parents compared to controls. The same study found that parental disordered sleep and fatigue are more common in parents of children with epilepsy compared to controls. What are some consequences of inefficient sleep? We've discussed many of them in the previous talks, but here are some additional considerations. So we're talking about caregiving for people who have, in many cases, a complex medication regimen. They may require other interventions, like suctioning, for example. They may have an airway clearance regimen, which requires specialized skills. They might be on a ventilator. Many of the ventilated patients have epilepsy. And this is not an easy task to manage this around the clock. And oftentimes, it's difficult to find help. So it's really the parent or caregiver who's performing the brunt of the work, and they're performing complex medical tasks. So to put this in context, residents and fellows and trainees, the ACGME found that for this group of people, 80 hours a week spent working is considered a safe limit to prevent medical errors. Parents don't have shifts. Caregivers don't have shifts. They're not working. They're working far more than 80 hours, both with their regular job and then spending at least 21 hours or more caregiving for a sick child. Another study by Arzalier, Daray, and colleagues in 2018 found that when they provided anesthesiology residents two different scenarios where they had to perform different tasks related to different emergent cases, in both situations, the sleep-deprived cohorts always did more poorly. In fact, they found that simulations after one night of insufficient sleep increased errors in medication dose and administration, delay in recognition of hypotension, and a delay in communication with the mock surgeons in those scenarios. So one can extrapolate this. And perhaps there is a risk for medical errors at home or a risk for not communicating serious acute changes to the medical care team. Now I'm going to switch gears and talk about some results from a rare epilepsy network study, which assessed the sleep of caregivers and parents of young children with early life epilepsies. They found that if a child had difficulty falling asleep, if the child had excessive daytime sleepiness, if a child had frequent nighttime awakenings or very restless sleep, this was associated with caregiver fatigue, caregiver sleep-related disturbance, and caregiver sleep impairment. They also assessed caregiver anxiety and depression in a logistic regression model and found that protective factors were companionship and higher cognition scores and risk factors were fatigue and poor sleep quality. They found that nocturnal monitoring increased parental fatigue and sleep disturbance. And this is concordant with previous studies that I talked about earlier. They found that nocturnal seizures were associated with increased parental sleep disturbance but not fatigue and daytime functioning. Impaired caregiver sleep can impact the family socially. This is more anecdotal information. There are a few studies that look at this, but it's well known that other siblings may receive less attention. There can be sibling guilt. Behavioral sleep disorders may also develop in siblings. When a child has many special health care needs, that child may receive a higher proportion of attention from their parents than the child who doesn't have a medical problem. And that can also cause different dynamics in the family. And I've heard patients talk about this and their worries about their children actually developing behavioral sleep issues because they want more attention from their parent. One caregiver typically spends more time at home. The higher wage earner spends more time at work. This can affect interpersonal dynamics between spouses. This causes marital strain. And there's a high rate of divorce in the parents or caregivers of children with epilepsy. Impaired caregiver sleep can impact the family financially and economically. So the sleep disruption can affect the finances. It's not uncommon for children with epilepsy to live in poverty, actually. And depending on the state, Medicaid will pay for various medications, respite care at home. But it's not financially easy from a medical perspective, but also a time perspective in terms of wage earners. And then COVID just exacerbated this relationship. What are some mechanisms and mediating factors? We talked about some of the behavioral and social factors. There are other behaviors, such as altered light exposure. We talked about the circadian and sleep dynamics earlier. There are physiologic mechanisms. Impaired sleep leads to neuroendocrine stress, cardiometabolic stress, increased inflammation. And then there are psychological mechanisms, as well. And then we know that, for example, shift workers are at risk for chronic illnesses like type 2 diabetes, coronary artery disease, and cancer. Irregular sleep duration is associated with cardiovascular disease. And so is irregular timing of sleep. And this is very important, because we think about, well, how much sleep are you getting? But how constant and how regular is that sleep period? And how consistent is that sleep period? How constant and how regular is the sleep cycle? When do you actually go to sleep? And it's so hard to have a regular and constant sleep duration and sleep time if you're taking care of a sick kid. The sick kid doesn't get sick on a schedule. What are some interventions and next steps? Well, very excitingly, the American Heart Association is really taking sleep seriously. We often think about smoking. We think about obesity. We think about all these other things, alcohol as risk factors for chronic disease. And now sufficient sleep or insufficient sleep is really being promoted as a risk factor for cardiovascular disease. So awareness is important. Other things that we can do is ask about parental sleep if possible, even if you're a pediatric doctor. And refer either the pediatrician can make recommendations to, hey, go talk to your primary care doctor about this. Or if you're an adult doctor, refer back to the PCP or sleep specialist as appropriate. Screen the child for disordered sleep. A lot of pediatric sleep disorders are very multifactorial. Something like sleep apnea can also interact with a behavioral sleep disorder. We learned about RLS. There's so much interplay between all of these sleep disorders. So screen the child and refer as appropriate. Advocate to insurance companies and legislators for increased funding for at-home respite care. That's one of the ways that we're going to be able to allow the caregivers to get enough sleep at home. Not all caregivers have a large social network or family network where they can develop the skills to take care of the sick child. And many of the children need 24-hour care. And parents are often very grateful that someone asked about their sleep. There are so many times that I've had parents, even when I was talking about their child's sleep, really just break down in tears and say this is the first time someone asked me about my own sleep. I know this appointment's not for me, but this is something that I'd like to talk about and I wish someone had asked me about. So it's an important thing and it can make a big impact, both on the caregiver and the child. What is the impact on clinical care and practice? We've learned that the sleep of caregivers of children with epilepsy may be worse than the caregivers of children with other neurologic decision conditions or typically developing children. Disordered sleep of the child may be one of the factors which impacts caregiver sleep, fatigue, and daytime functioning. So look for opportunities to intervene early. Caregiver sleep may have important health-related social and financial effects for the child. And disordered caregiver sleep impacts their own short-term and long-term health. Again, recognize this early and potentially avoid long-term sequelae of poor sleep. And then lastly, if you have the opportunity, please advocate for resources which could be used towards respite care for families of children with epilepsy. Thank you to everyone who's helped me along this journey and thanks for spending time to talk with me about caregiver sleep.

epilepsy caregiving

caregiver sleep deprivation

health impacts

parental stress

respite care

interventions